Myalgic Encephalomyelitis "A Million Experiments to try"

I haven’t written a blog in a while. Life got a little rough (as it does!) But I’m going to share just a small part of that roughness, because I think more people need to be aware of the very heartbreaking and complex nature of an illness -  Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. An illness Id never never really heard of, and an illness my daughter was diagnosed with at age 18 years of age. 25% of people with ME/CFS who are severely affected and they are bed and house bound. Sadly, for the last 3 years this has been my daughters experience. This is some of our story.  

My daughter was the most energetic, passionate, creative person I knew. She was just finishing high school and about to go to University to study design.. a life path she’d worked so incredibly hard for. She was a well loved student, dancer, designer, artist and friend. She was the bubbly energy of all our family parties! I’d just finished single parenting 4 kids for the previous 10 years and had my van ready to go travelling. Freedom from responsibilities around the corner, and the celebrations of my kids flying their wings in my heart. But with her diagnosis came a very different reality...for both of us. 

The years that followed this diagnosis have been ... well... cruel. Having a child with severe ME/CFS is like living some kind of torturous reality where you grieve every day the active, vibrant go getter child you once shared your life with. And begin your role as full time carer for a very, very sick young person, who can no longer do the most basic tasks like read, walk, cook, sit up, remember things, eat the foods she loves... she suffers in pain everyday... hidden away from the world in a dark room... for weeks, months... and now years. What made this reality even more excruciating is that for a very long time not a single doctor could tell us, what was wrong, what was happening to her... or if she will ever come back.

In the early days of her illness we saw about 5 different doctors, all who did not have a clue what was wrong with her. I would beg them to listen that something was VERY wrong, but we would leave those appointments often in tears, devastated, with no answers. She would endure relentless bouts of sickness, crashing for months at a time, only to temporarily recover before being hit with another debilitating episode. "It's just another virus," the doctors would dismissively say. Yet, deep down, I knew that couldn't be the truth. There was something VERY wrong. 

Then, in 2021 she crashed so badly, that she didn’t bounce back and we were in total despair. We finally found a GP who knew what was wrong with her and he diagnosed her with “Severe Myalgic Encephalomyelitis.. (or Chronic Fatigue Syndrome .. which is an incredibly outdated term, but i'll touch on that later)

This diagnosis started a new world of unknowns about what had caused it. Was it triggered by her previous bout with the Epstein Barr Virus? Or her positive tests for Lyme Disease and Bartonella? (which opened up a whole other can of worms around how can you test positive for something that isn't meant to be in this country.. but that's a whole other blog!) But then... perhaps it stemmed from exposure to mold, trauma, her hypermobility, neurodiversity, or gastrointestinal issues? Maybe its a bit of all of it? Suddenly as a parent the world expected me to be a doctor, nurse, researcher, second brain, carer, parent, advocate and also smile and somehow keep my shit together. All whilst I slowly watched my daughter fade away before my eyes… with no answers to why or how to get her back. As a parent all I wanted to do was help her get better, all I wanted was the the answer, the science, someone to listen to my desperate pleas for help. And I all got was a world full of nothings. An overwhelming sense of helplessness. And a million experiments to try. 

The reality of living with the complexity of this illness, alongside the myriad of unknowns (and rabbit holes to go down!) is that it takes an incredible toll on the person with ME... and their carers. Each day as a caregiver involves a relentless cycle of research, scheduling appointments, waiting at pharmacies, researching the myriad of medications, attending to household chores, cooking a whole new diet, working remotely, drowning in paperwork, applying for supports, being a second brain for someone and providing physical and emotional support to my daughter—who, on her darkest days, would just beg me to let her die. There are countless nights laying with her in bed grappling with pain, insomnia, and suicidal ideation, which would often have me crawling into my bed wondering if we should both just die. Because honestly .. is this now our life? Will anyone ever be able to help us? Is this going to last forever? No one knows, they say.

Ive asked countless doctors, specialists, ME Associations, therapists... how long will this last? Will she have this forever? They will say something like "ME/CFS varies in long-term outlook from person to person, some people recover or have a long period of remission... some will need to adapt to living with ME/CFS… some will get better, then get sick again later in life... the outlook is better for young people... There is a lot of unpredictability and a lot depends on severity. But the fact she is young in on her side" 

This response just send my brain into a blur! How am I supposed to find hope in that? Where are the facts? 

So naturally, I have felt an incredible amount of anger and despair over the last three years. I’ve spent hundred of hours researching the illness and potential treatments and thousands of dollars trying things. At the end of the day, what I have found is not very comforting. This is the least funded illness in regards to research. Despite its significant impact on quality of life. ME/CFS receives disproportionately low research funding compared to other diseases with similar or lesser prevalence. This lack of funding blocks progress in understanding and treating the condition. The Centers for Disease Control (CDC)and Prevention and the National Institutes of Health (NIH) both confirm that ME/CFS is indeed recognised as one of the most debilitating illnesses, significantly impacting patients' quality of life. 

Numerous scientific studies, medical journals, and reports from reputable organisations specialising in ME/CFS research and advocacy back this. A study published in the "Journal of Health Psychology" in 2018 titled "The health-related quality of life for patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)" states clear evidence and insights into the challenges faced by ME/CFS patients and their diminished quality of life. The study delves into various aspects affecting the daily functioning, well-being, and overall quality of life of ME/CFS patients, shedding light on the severity of the condition and the need for improved management strategies and support.

Therefor, Im sure you can understand the anger. I’ve often asked myself why does this illness not matter? Why does my daughter’s life not matter? Why does my life not matter? Her Doctor would often say to me with very compassionate eyes “Your daughter is an intensive care patient…  and she is in your care” How? How can I be the sole carer for someone this sick? How am I meant to do this? 

The impacts of the lack of professional understanding, the lack of scientific research and public awareness also means that going out into the world can be hard and incredibly isolating. When I tell people my daughter has severe Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, people generally look at me blankly, including many Drs and specialists. One of the few doctors in the world who understands this condition is Dr Nigel Speight, states that calling this condition Chronic Fatigue Syndrome its a bit like saying people with Alzheimer have "chronic forgetfulness syndrome!" Labels need to match reality of conditions! Because honestly this impacts deeply on the people living with this and carers, more than anyone will ever know. Chronic Fatigue Syndrome in no way describes the complexity of this illness. Myself, and many parents and carers I have had contact with, are so tiered of explaining the true nature of this illness to every single person we come in contact with. It just adds to the exhaustion. 

Ive had to find a place with this that feels survivable... because its actually impossible to live with this illness and also be responsible for educating the entire community about it... so now if I have to explain our situation to someone (like in the situation below, explaining why my daughter needs to lay on the floor in waiting rooms for appointments...as so many places do not have appropriate chairs!) I might say something like, my daughter has severe ME/CFS, which is a neurological condition/disease (as outlined by the World Health Organisation) I probably won't say all of this... but the reality is it is a severe neuroimmune, nueroinflammatory disease affecting the immunological, neurological, autonomic, mitochondrial, endocrine, connective tissue, and energy metabolism systems. It is a multi system illness. Fatigue is only ONE of the many debilitating symptoms. She has a list of diagnosis's including Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation syndrome (MCAS), Gastrointestinal disorders...and many other labels...that are all a part of the ME/CFS. Which means every single part of her body is impacted. 

After 3 years of living with this, navigating the health system and adapting to our new life,  we have more of a handle on how to care for her ME. We have moments of more stability. She carefully paces her day to manage her very limited energy, she lives by a daily routine of a strict diet, meditations, supplements, medication, small amounts of movement, doctors and specialist visits and micro rehabilitation that has become a way of life. I work from home and continue to care for her and provide daily supports. And she navigates a daily tightrope to avoid triggering Post Exertional Malaise. 

Post Exertional Malaise/PEM is a hallmark symptom of Myalgic Encephalomyelitis. It's the worsening of symptoms, often severe, following physical or mental exertion. It is totally disproportionate to the activity, it has a prolonged recovery time that may last days, weeks or months... and it can be absolute hell. What's incredibly tricky with this is it can occur immediately after the activity or it may have a delay of hours or even days, making it incredibly hard to navigate. A full PEM crash could exacerbate her symptoms and leaving her incapacitated for months. Therefore every step she takes must be carefully measured to prevent triggering this response. The fear of experiencing excruciating pain and total shutdown is present constantly, making even the simplest activities delicate ones. However despite this, she courageously and cautiously ventures to increase her activity level, all while acutely aware of the potential consequences.

Sadly, sometimes this has gone terribly wrong. Like the day we felt she had been doing really well and things were picking up, so we carefully took her for a swim at the beach. She had only been out of the house 4 times that year and she was desperate to see the water again. Sadly this lead to a crash and her being bed bound again for months after, only able to shower every few days, go to the bathroom and she suffered extreme amounts of pain and fatigue that had her wanting to end it all. We have now learnt to go much, much slower. Its like a weird reality that often doing less will give you more... and then with that little more... do a little less ?? Weird and confusing right! But if that's what it take to avoid a living hell.... then that's what we do.

With this approach her window of wellness is widening very slowly. She has recently built up her capacity to be able to walk 5 minutes most days in our backyard. These are the glimmers that keep us going. 

She’s still mostly invisible to the world outside, she missing from many family events (and photos), and she has spent many celebrations alone.... but on good days she can now spend a short time in contact with the people she loves and she spends much more of her day out of bed. We get glimmers that she might be improving, but I can tell you as a parent after having hope stripped away from you time and time again it can be hard on the heart getting too hopeful...especially when PEM looms around. Hope can quickly turn into despair and complete heartbreak. So I now hold a more cautious hope. A slow kind of hope. That in time her glimmers of life will widen… like a slow sunrise. We live with a deep appreciation for each moment of steadiness... and Im in awe of how far she has come...both in living with this, and her acceptance of all that has changed. 

We wanted to share this blog because we want the world to never forget these people, particularly the young people, who are fighting for their lives… and a quality of life... Every. Single. Day. They have lost their dreams .. and they don’t get a clear path of whether they will recover or not… or when… how long it will take .. or if that recovery will last. You will never see these people on their worst days, as they are hidden away in dark rooms, but they exist and their lives matter. I want all the parents, partners, carers whose lives, hearts and souls have been forever changed by this illness … to know that their lives matter too. What we are living with right now, in regards to how this illness is completely misunderstood and uncared for, is not ok. It’s completely neglectful. The uncertainty surrounding the prognosis of ME/CFS, the lack of clear paths to recovery, and the absence of clear science and well funded research only compound the challenges faced by the people living with ME and their carers.

My daughter and I have a lot to be grateful for. We have a home, we have friends and family .. and Luna our lab. We have a close connection, we laugh, and we find many moments of joy in the simple things, like candles, clean sheets, good food, cups of tea and a good series that will make us laugh and cry. And Luna is a brilliant caretaker. But what we really want is more research and more support in the community to match the need Especially supports like NDIS being more accessible to this community. The first 5 years of an ME/CFS diagnosis turns your entire world on its head. People living with ME need this help for their quality of life and dignity. Parents caring for their kids and all carers need this help for their survival. This is not a game. The suicide statistics in this community are very high. Everyone living with ME/CFS needs to know that their life is important and that they are seen, heard, believed and that their quality of life matters 💗 

Lastly, my daughter is going to try a treatment overseas, as soon as she has the capacity to fly, which might be months or years away, but we want to treat the underlying Lyme Disease, as well as all her co-infections. Hopefully this treatment will support her body and brain in her recovery. It’s not guaranteed to work... yes, it’s another one of the million experiments to try. But when you are 21... with your whole life ahead of you... its one we think is well worth trying. 

We want to thank every single person who has supported this fundraiser and provided support to give her this opportunity….hope and love 💗

Donate to Help Alysse receive treatment for Lymes Disease, organized by Kieren, Thomas, Lachlan  OBrien

Also if you are living with ME/CFS you will deeply know that the safety of the practitioners you see is paramount to your health and wellbeing. 

Here are a few safe, well informed, services and resources that have helped us along the way

Exercise Physiologist - Emily Bland - ME/CFS POTS specialist

Active Health Clinic - ME/CFS POTS specialist

Occupational Therapist - Emma Tindil - Pivot Health - ME/CFS POTS and invisible illness specialist

Psychologist - Paula Sladdin - Chronic health specialist

Physiotherapy - Lyn Guy - Neurological and chronic pain specialist

Dietician and gut health - Joanne Baker 

Emerge ME/CFS Association

Merge Health - Dr Nicholas Morgan

Herbalist - Julieanne Beeston

Jeff Shearer - Acupuncturist

Primal Trust online program

Online support group for parents with young people with ME/CFS Australia

Animation project - the best !

Unrest Film

Not Just Fatigue Film 

Author, A. (2021). Chronic Fatigue Syndrome: Most Neglected Disease, NIH National Institutes Health. Health Rising, 3 April. Available at: https://www.healthrising.org/blog/2021/04/03/chronic-fatigue-syndrome-most-neglected-disease-nih-national-institutes-health/

Why my family doesn't celebrate Australia day on Jan 26

 

Wurrwurrwuy (Garanhan)  - Macassan Beach- Arnhem Land

One of the biggest values I want my kids to grow up with is empathy. I want them to care about the experiences of other people and look beyond themselves. I have always felt that a very important part of this is for them to have an awareness of the land they live on and its history. I want them to have an understanding and care for the experiences of others, especially the First Nation/Aboriginal people of this land. 

Therfore this rules out us ever celebrating Australia day on January 26, the day that Arthur Phillip landed in Sydney Cove and started the long and traumatic process of invasion and colonisation of this country. Holding celebrations on this day continues to hurt people, as it only tells one side of the story, denying an entire culture their history and experiences. A culture that has been here for 60,000 years. A rather long time in comparison to the 230 years since colonisation. 

Do we really want to be involved in a party that continues to hurt people? It baffles me that a large portion of our country.. including our politicians... think its OK to do this. 

So over the years when this day comes around in my house, I ask my kids to imagine for a moment that everyone is having a party on the day that our family was traumatic killed and our lives and culture changed forever.  A day where our land and house were stolen, and the things most important to us were destroyed.  I ask them to imagine what it would feel like to be taken away from me, purely based on our race and to not know where I am. Forced to live the ways of another culture, speak another language and live with people they don't know. And then imagine how it would feel that the people who now live in our house celebrate this day as an achievement. A day of success. The day that caused us deep deep heartache, pain and trauma...is now their day of celebration. 

I ask them to imagine how that would feel? 

When my kids have expressed at times that it feels "unfair" particularly if I've said they can't go to a party or event. We talk about this idea of fairness. How fair is it to ignore the voices and experiences of very significant people to this land. How fair is it that Australia Day currently ignores the whole truth of what happened on Jan 26 1788, 230 years ago. And they get it. 

Sometimes they have asked why we don't celebrate when we didn't "do it" (which I'm sure they have heard countless times in our society) I ask them does our empathy only apply to people we have directly caused harm too? Nope. If we saw someone being hurt in the street would we ignore it just because we didn't do it? Would we walk the other way? Nope. So why would we ignore this just because we may not have directly hurt anyone? People are still hurting now. The impacts of colonisation are still huge and devastating. Do we want to add to that hurt? No. Do we want to create a culture of healing and care. Yes. They get it. 

When they have asked me if this means they are bad because they are white.. I say of course not. I don't think any Aboriginal person I know would want my kids to feel they are bad. But we do have a responsibility to stand with Aboriginal people in this white dominant culture. To stand up and take action in regards to the injustices that continue to hurt people. So why wouldn't we take a stand on this day... When it's the right thing to do. They get it. 

I don't know alot...But I know enough to know that my kids are open to asking questions and then seeing the conflicts this day brings and they get it. And in my role as a teacher at TAFE in 8 weeks of teaching students some of the true history of this country.. attitudes change... racism changes... And people become inspired and want to learn more about Aboriginal Australia and its 60,000 year history. People feel compassion. People feel angry and sad that they never knew. People feel proud of Aboriginal Australians. And people stop celebrating Australia day. They get it. 

Sadly this country lacks awareness of the true history of what has happened here in the last 230 years. Our government lacks the courage to truly face it and acknowledge it, preventing so many people from getting it...

But I/we have the power as people to face it in our own actions. To use this day make change and to educate ourselves and our kids about the truth. We can use this day as an opportunity to feel deeply and enquire about what Jan 26 might mean for the Aboriginal people in this country. We can use this day to demonstrate empathy and care. And to join with them and celebrate the survival of the oldest living culture on earth. 

So here is some recommended viewing and reading to do instead of celebrating Australia day on Jan 26 2018

Videos - 
First Australians episode 1 (or any of them as they are all fabulous) 
https://m.youtube.com/watch?v=oTJG8AJ_tDs
Our Generation
https://m.youtube.com/watch?v=Tcq4oGL0wlI
Bringing them Home - separation of Aboriginal and Torres Strait Islander People from their families 
Utopia 
Rabbit Proof Fence 
Samson and Delilah
Women of the Sun

Books
Why Warriors Lay Down and Die 
Blood on the Wattle 

Articles - 
https://www.sbs.com.au/news/survey-reveals-most-australians-don-t-know-what-australia-day-is-for

Events - 
http://yabun.org.au/ or check your local area for Survival Day events. 

Songs - 
Archie Roach - Took the Children Away
https://g.co/kgs/xUstFM
Yothu Yindi - Treaty 
https://g.co/kgs/mecnMj
Yirrmal - The Bridge 
https://g.co/kgs/XirXog
A B Original - January 26
https://m.youtube.com/watch?v=tZ9qeX4gUeo

Find out more about the country where you are really from.  Check out the interactive map at http://www.abc.net.au/indigenous/map/

When Christmas feels clunky…Doing adventures instead.

So to give you some back ground to my clunky relationship with Christmas, I grew up as a Jehovah witness.. yes feel free to run away now! BUT I’m not a Jehovah Witness, it was just another one of my mum and dads strange dreams. To raise 4 kids in the middle of nowhere in a shed…which eventually turned into a house…  with no water, electricity or a “normal” toilet... to have very minimal money … and be Jehovah Witnesses! 

So what this then looks like for kids is no Easter, Christmas, birthdays and pretty much not being involved in any of those big celebrations kids enjoy in our culture! In my childhood I never went to a birthday party, I never received a Christmas present, and I can remember on Easter when I was about 10 years old my teacher crushing up Easter eggs so I could be a part of a class activity of making an Easter basket. However mine was not an Easter basket. It was a non- Easter basket with crushed chocolate in it. Yes a very creative way to make sure I appeared to be the same as everyone else (insert eye roll!)

The most challenging time as a kid though was when everyone would all come back from holidays after the Christmas break and share what they had got from Santa. I had no idea who Santa was.. but he gave great presents! People would share amazing stories of toys, gadgets, swimming pools, etc etc etc. I would dread people asking me what I got for Christmas. I would respond with something like “Oh I got money” As my grandmother always gave me money. So thank goodness I had that. I learnt very quickly the art of being an outcast but finding ways to look like I was fitting in! 

As I took my stand against the religion when I was about 14 and refused to go to meetings 3 times a week, I still didn’t participate in Christmas events, as I really had no idea how to. But when I had my first baby at 16 I was determined to give him the best Christmas ever. I went overboard buying stuff, trees, food… even though I really had no idea what it was always about. I often have to ask... what are we celebrating? Did Jesus die or was he born?

As the years went by and I had 4 kids, Christmas always felt somewhat conflicting. I suck at craft, I’ve never made a ginger bread house in my life, I feel like the environment is dying in stuff… but everyone continues to buy endless stuff...I find it confusing. However I found my groove and got into the swing of it to ensure my kids fitted in. It was probably a very tame version, but it was a version of trees, presents, Christmas morning excitement and running to 3 extended family homes in one day. However I've never really felt very connected to its meaning. I feel more like an odd bystander watching and trying to get it. I've never been able to receive a gift without feeling incredibly uncomfortable. For many years I would return the presents my husband brought me. Which in reflection may have contributed to us getting divorced!

Christmas changed again when I got divorced. It turned into one of the most horrendous days of the year as it just brought up grief, loss, pain, anxiety and arguments about who was having the kids. So I ditched it. I decided I wouldn't “do” Christmas anymore, no more running to peoples houses and no more presents or trees. I had to recreate this day to fit for my kids so it wasn't a day a pain. So for the last 7 years we have transported our way to Woodford Folk Festival. That is their Christmas present. We "do" adventure. 

Travelling a long distance on Christmas days felt like a great way to avoid the clunk and the pain of not having the 2 parent family structure anymore. It felt like a great way to “give” something to my kids that was a memory rather than an item. Woodford helps me hold space for any loss and grief that might show up during this holiday period. In doing this I don't have to pretend. I get to create our version of it. Because in reality Christmas at our house now is just one big clunk.

Sometimes I have my kids, sometimes I don’t. Sometimes I have 1 kid. Sometimes I have 3 or 4. It changes as to who wants to be where. So I’ve let go of the idea of what the "proper" Christmas day looks like (as that's just painful and disappointing...and I suck at it anyway!) and I've even given up the idea that we all need to be together. 

As a single mum I've had to let go of working my butt off to try create the energy and enthusiasm of two parents, smiling and pretending everything is fabulous just like the movies. Because its not like that at all...and that is just exhausting.  In reality those first Christmas's after getting divorced were just plain awful, lonely and hard. So there was only so much of that I could handle. I had to create something new (so yes I went for setting up tents with kids in extreme heat conditions and volunteering so we could afford to go.. simple.. not! But a different kind of hard :-))  

So whatever your day looks like.. and whoever may be present or not present… I wish you an adventure…and I hope you and your family find your unique funk (or clunk) on this colorful day. And create whatever version of Christmas that works for you ❤

       

Death, anniversaries and all that jazz

When I was a teenager my mum asked me to sign a piece of paper to say I would be her guardian and power of attorney, with my brother. I remember at the time a part of me cringing at this responsibility. What would that mean for my life? How responsible would I be to advocate for her and for the end of her life? Did it make me responsible for her in ways I didn't want to be as her daughter. But then other parts of me said of course I would sign it. Of course I would make sure she was always taken care of and of course I would make sure her end of life was what she wanted. 

My mum was 40 at this time, her mum had passed away from Huntingtons Disease, so she very clearly knew what her future looked like. Her aunty also had HD at this time and was very sick with the illness in a nursing home. She was being tube fed to keep her alive. I can always remember my mum after visits to her aunty crying in fear that that was going to be her. She would make me promise that we would never do that to her. She didn't want to be kept alive in a bed, with a tube feeding her, when she could no longer swallow. She didn't want to be kept alive with any medical interventions. So she did the one thing in her power at this time to ensure that didn't happen and she wrote a living will.

Slowly slowly over the next 18 years she lost all of her abilities and the nightmare of what she knew would happen unfolded.

I always had an idea in my head of how my mum would die. I'd read a lot of stories about people with Huntingtons Disease choking, or not being able to eat and slowly dying from this, or getting pneumonia and dying. So I imagined that this was something like how my mum would die. I imagined I'd get a call from the nursing home, I'd be there with her, perhaps sleep over and stay with her until she died. I imagined we would have a palliative care nurse, we would play music, have candles and I'd sleep in her bed with her. But it didn't happen like that...

I had driven from Newcastle to Kempsey to visit mum in November 2013. I remember on this visit mum was particularly quiet and sleepy. But she was loving the kids, and looking fairly peaceful. I did wonder though if she was OK as she kept dozing off to sleep in her chair, which wasn't so normal for her. I did my usual jumping into bed with her, hugging her and telling her I love her. I told her I'd see her at Christmas (after her giving us a childhood of being Jehovah Witnesses and refusing Christmas.. She now decided this was something she loved and wanted a Christmas tree and all!)

I drove back to Newcastle and it was now very busy end of year christmas, school assemblies, presentations and dance concert time for my 3 kids, so I got stuck into all that jazz. On the 10th December I was at my kids award ceremony and I got a missed call from the nursing home and then a missed call from my dad.  I looked at my phone and knew I should go outside and return the calls.

I rang my dad. My mum had passed away.

As much as I'd waited for this moment for years I was just devastated. I stood there in the yard of where the presentation was being held and I felt shocked. I felt instantly separated from everything that was happening around me. How? She had been sick during the week with a flu. But dying?? Just like that? Without the call to say come.. Death is near. Yep she was gone. She died on her own, in her room, where she spent most of her time these days. The nurses had checked her, closed the door to call a Dr, gone back to check her and she had passed away. No fuss, no big deal.. Just gone.

My imagined idea of being there with her during her death faded away...and again life showed me that things don't always go how we imagine... or plan.

I found my kids from the presentation and quickly dodged all the teachers and parents. I got my kids into the car and let them know that their nanna had passed away. They cried and cried. We all drove home in tears and shock. After all these years of sickness her body had died. My chest filled with heavy heavy bricks...and the reality that Huntingtons Disease kills people, set in.

The phone calls to family and friends started and funeral preparations began... But given we were in the period of year where there is "all that jazz" going on, my daughter had her dance concert which she very much wanted to attend. So I decided I couldn't go home to Kempsey for another 5 days, until she had done that. It felt like one of those incredibly hard moments where being a single parent tears me in different directions! And I can't be everywhere I'm needed. But we would try do it all. 

It was the most horrendous 5 day wait of my life, not being able to be home with my family straight away.  I felt so torn in my mothering role, and my role of mothering my mother! My body needed to be "home" with my mum, but she was already gone. So I organized a funeral over the phone with my family. And cleaned and cleaned and cleaned my house until those 5 days and a dance concert were over and we went home to be with her.

My mum's funeral was the saddest day of my life. Seeing her body laying in her coffin and her spirit not there was heartbreaking. I looked at her face and had a very strong feeling of "she has gone to another room". 

We then celebrated the life she had with us all. 

Now... 4 years on each anniversary of this time feels so different. The first year after she died was a haze. My whole life often revolved around my mum and now she wasn't there. My identity changed, my family changed, everything felt different.

Slowly as the years pass by anniversaries are gentler and those changes have settled into a new normal. I have many days of grief where I feel like someone is stepping on my chest. I miss her hugs. I miss the safety of her presence. I can still find that feeling when I visit her grave. I lay on top of her grave, just like I used to lay in her bed at the nursing home and I feel that same feeling of comfort and safety I always felt with her. 

That feeling will never die.

Teenage parenting, education and power

I was looking back through some old photos in preparation for my second son turning 18 last week and came across this picture. It had me reflecting on how important getting this University Degree has been in my life. As a young woman and teenage parent it has given me the opportunity to work, earn an income and raise four kids on my own, a situation I wasn't really anticipating back then.. but really does anyone's life look like how they thought it would?

I had a very strong feeling when I was a young mum that I was going to need an education to survive. I was determined that I was not going to be left behind in life, just because I had fallen pregnant at 15. I knew I needed to do this study and complete it, or I may never do it. Something within me knew that this was going to be important for me to ensure I could take care of myself and my son. I knew that ultimately I was now responsible for myself and what happened to my life.  

I had left school in year 10 to have my baby and I knew I had to get back to an educational institution as soon as I could after he was born. So when he was 1 year old I went to my local TAFE to sign up for anything I could really! I can't remember anyone in high school every really asking me what I was interested in. Child care was suggested and that was always going to be my one and only career path. So I applied to do child care at TAFE as my first choice, but I didn't get in (Phew!..as I really don't think this was ever my career path.. that is for the wonderful, creative, energetic souls!) So this then lead me to my second choice, and the career I have been doing for the last 20 years.. working in Community Services/Social Sciences.

I started a Youth Work course which changed my life and my entire experience of education. I had never felt very smart at school. I struggled a lot with social pressures in high school and I was way too distracted. But when I went to TAFE for the first time in my life I felt like I was treated like an adult. I made friends, connections with teachers and connections with my community. I felt I was believed in and I got to study something I soon learnt that I felt very passionate about - Social Justice! 

I remember TAFE letting me bring my son into class on days where I couldn't get child care, he was 1 year old at this time. No one ever treated me like I was breaking the law if I did this. No-one treated me in a way that created any feelings of shame for being a young mum. I felt supported and that I finally belonged.  I was incredibly shy and didn't talk for a long time, but the environment allowed me to gradually gain a sense of confidence in myself. I would study at night and do my work when and wherever I could.

I spent two years at TAFE study a Diploma in Youth Work. I worked at a local youth refuge on work placement and gained causal employment there, where I wasn't a lot older than many of the young people who lived there! This was my first ever paid job and I was able to build great relationships with the young people and staff. 

I was determined to explore my passion for Aboriginal culture by doing a work placement at an Aboriginal Medical Centre. I was so worried I wasn't going to fit in, but I remember my placement teacher clearly saying to me "you will fit in anywhere you go!". I was so thrilled I was successful getting this placement, where I could explore my passions for Aboriginal culture with Aboriginal people. I was inspired, challenged and exposed to new people and knowledge. 

When I was 19 I finished my course at TAFE and I then had to make a hard decision about whether to go to University or not. My son was now 3 years old and my mum was getting very sick with Huntington's Disease. Responsibilities played a huge part in my decision making, as I felt I really needed to stay and help look after my mum. There was a part of me that really wanted to move and go to University on campus, but I eventually made the decision that I couldn't leave her. So I signed up to do a Bachelor of Social Science via correspondence, which I completed over the next two years.. from my lounge room!

Again, I would study at night when my son was asleep and when he was at pre-school. I would work at the youth refuge when I could and I eventually got more causal work at a Womens refuge where I worked with women leaving Domestic Violence and their children. I was also going through my own experience of DV at this time with the father of my son, which was very dangerous and scary. This was something after years and years of terror I had to learn ways to protect myself from. One thing I learnt through this was that even though I had left this relationship when my son was 3 months old, DV doesn't stop, if anything it gets worse.

Being a single young parent, having a sick parent and not having a supportive relationship with my childs father, I knew I needed to be incredibly independent. Getting this degree was a huge part of that process. I knew that having an education was critical for me to have the ability to support myself.

And after another 2 years of dedication, commitment... a tone of really boring readings, writing long essays... and running to the mail box to get my results... I finished my degree. I graduated with a Bachelor of Social Science majoring in Human Relations and Communications & Counselling and Mediation. I had finished my degree at the same time as people from my year at school, which felt so incredibly important.


I was now 21, repartnered and I gave birth to my second son. 

I remember a counsellor I was seeing at the time then telling me about a job that was going at a local Family Support Service. I doubted myself big time for this position but I applied and I was so incredibly fortunate to get this job. I worked there for the next 10 years helping to create supports and services for teenage parents. We created young parent antenatal and postnatal groups. I also created groups with Aboriginal families, and families with young children, needing support and connection. I worked with the most ethical, inspiring and passionate team of people. My education stepped up to a whole new level in this role. I learnt so much in this job, both from my colleagues and from the people I worked with, who allowed me into their lives to witness their stories.   

During this time I also found myself on the other side at TAFE, in a teaching role. This role was so scary when I started! I didn't sleep for weeks as I was so petrified of not knowing the answer to a question that a student might ask! I have been teaching for 15 years now (now I just tell them to google it if I don't know..  we can never know everything!) and we continue to learn together. 

Teaching over the years has become my absolute love and passion. I have been able to give back to thousands of students what was given to me. I get to support people to start their education journey and create their dreams for themselves and their families.

My life has grown and changed dramatically over the last 18 years. I've had 4 children, I've been married and divorced, my mum has died, I've moved and started my life over again. Through all of this though my education and my degree have been so vitally important. It has allowed me to stay steady with employment, contribute and connect to the communities I live in. Its connected me with work I feel passionate about and people I can relate to. Its helped me provide for my kids, put a roof over our heads and its given me the ability to give them opportunities in their lives. We are far from "rich" ... one income doesn't go very far... but we are connected. And I keep telling them when they go to University I am coming...as I still have my dream to study on campus!    

 Education has given me the power to have some control over my life and the life of my kids. I am forever grateful I had that opportunity and took it.

So to end this story I will share a quote from Malala, as a reminder of what some young women have to overcome to get access to an education. I feel so strongly that every women, no matter what her circumstances, or how or where this education happens, has this right and need. And really, as much as I love the idea of going to a University campus, I am also happy to sit on the floor with Malala too. Where we get educated doesn't really matter...lounge rooms, floors, Universities...or as my Aboriginal teachers have always taught me...in nature. What's important is that we have access to knowledge... and the opportunity to learn.